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Bands to raise awareness for Cystic Fibrosis

When Ali Donahue was diagnosed at birth with cystic fibrosis, the average life expectancy for someone with the disease was 18 years. Now 18, Donahue is heading off to college at Boston University and expects to live a long and healthy life, complete with marriage, children and someday grandchildren.

“I don’t want people to think that I’m sick, that it’s over…I’m not dying…I’m planning on growing up and having a family and being a grandma and doing everything everybody else is doing,” said Donahue.

This is why she and a network of friends are on a mission to raise $5,000 in three weeks for the Cystic Fibrosis Foundation.

Cystic fibrosis is a genetic disease affecting about 30,000 adults and children in the United States, according to the Cystic Fibrosis Foundation. A defective gene in sufferers of the disease causes the lungs to produce abnormally thick mucus, which can clog the lungs and lead to life threatening infections. The average life expectancy for a cystic fibrosis patient is in the early to mid 30s.

Donahue said she hasn’t experienced serious complications from the disease since she was about 13 and credits her good health to advancements in drug and technology research along with family and community support.

The money raised for cystic fibrosis research has improved her quality of life and increased her life expectancy, she said. “Fundraising is so important,” she said. “It’s because I have all of my medications that I can live a normal life.”

To stay healthy Donahue takes medication called pancrease with every meal and snacks. This medication helps break down her food, because the digestive enzymes produced by her pancreas are blocked by mucus. Donahue also uses a mist nebulizer and wears a vibrating vest for 20 minutes every day. Both these mechanisms help loosen the mucus preventing it from sticking in and blocking her lungs.

It’s important for friend and project partner Caroline Etnier to help Donahue battle this disease. “I’ve seen her take all the meds and watched the life expectancy go up,” she said.

Etnier has watched Donahue grow up with the disease. The girls first met on the bus in the second grade. Donahue showed Etnier her club fingers, which she said about 75 percent of Cystic Fibrosis patients have, though doctors can’t explain why. The two have been friends ever since.

Donahue, Etnier and seven other seniors will wash cars, host ice cream socials, sell bracelets, and host a band competition all as a part of their final senior project for Cape Elizabeth High School.

Etnier with friends and project partners Whitney Legge and Hillary Nelson first started raising money for Cystic Fibrosis last year at school.

Outgoing Assistant High School Principal Mark Tinkham who is overseeing the senior transition projects described this group of girls as “tight knit.” Most of them, he said, have supported Donahue through years of coping with the disease.

“For them, it’s not simply a three-week project, it’s become more of a vocation,” he said.

Nelson, Etnier, Legge and others began selling rubber “Live Strong” wristbands last year and raised more than $500 for Great Strides, a cystic fibrosis fundraising walk around Payson Park in Portland.

“I didn’t even know they were doing it. I just came into school and they said, ‘we got $500 today,’” said Donahue.

Knowing somebody with the disease, said Legge, “makes you want to work harder to raise money.”

Nelson agreed, “It just hits so close to home.”

It’s exactly this energy and engagment Tinkham hopes the project will uncover in students. “They can go out and touch a life and make a difference,” said Tinkham. It is this real world connection that yields the most worthwhile learning experiences, he said.